Friday, February 25, 2011

The Blue Lips Disease...

When I began work as PHA's first staff person in 1999, one of the first things I saw was our purple ribbons.  Bonnie Dukart told me that purple - or periwinkle, to be exact - had been chosen because it represented the color that could be seen on some patients' lips...a color caused by oxygen deprivation.

More recently, our friends at PHA in the United Kingdom, decided to turn this reality into global awareness of PH.  They proposed a Pucker Up for PH Campaign to break the world record for kisses collected through the Guinness Book of World Records.

PH associations throughout the world jumped in and collected kisses...and, as they did, told the story of "The Blue Lips Disease".  Here, in the U.S. for well over a year, kiss collection became a fixture at PHA special events and in many other places.

We learned on February 18, 2011 that, working together, the global PH community had shattered the old record of 39,547 kisses - a record that had stood for 10 years. The PH community's new record is 54,949 kisses...and a whole lot of PH awareness...and, perhaps, a new way to describe this disease to a more interested world.

The fun (and valuable) video below from our St. Louis support group members is one of my favorites on this subject.  I hope you enjoy it, too!  Oh, and don't miss Patty Kaiser's story on how she got this media interest.  You can find it on her February 23 posting on PHA's Support Group Blog and another great web video featuring the St. Louis lips!


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